Local Girl Fights Rare Diseases

Jessica Greene, a vivacious brunette and a recent graduate of Kent State University, was enjoying her new career as Senior Research Analyst at Colliers International when she received some devastating news.

Jessica, who lives in East Hampton and graduated from the local high school, was diagnosed with two extremely rare blood disorders, PNH and Severe Aplastic Anemia.

Friends are planning a fundraiser on March 9 in Amagansett to kick-start her battle to defeat these formidable foes with extended treatment at Sloan Kettering Institute in Manhattan.

Aplastic anemia is a rare disease in which the bone marrow and the hematopoietic stem cells that reside there are damaged. This causes a deficiency of all three blood cell types (pancytopenia): red blood cells (anemia), white blood cells (leukopenia), and platelets (thrombocytopenia). It can develop at any age. Treatment for aplastic anemia may include medications, blood transfusions or a stem cell transplant, also known as a bone marrow transplant. It affects only four of every million people in this country.

Paroxysmal nocturnal hemoglobinuria (PNH) is a rare, acquired, life-threatening disease of the blood characterized by destruction of red blood cells by the complement system, a part of the body’s innate immune system.

Allogeneic bone marrow transplantation is the only curative therapy for PNH. Eculizumab, a monoclonal antibody that blocks terminal complement activation, is highly effective in reducing hemolysis, improving quality of life, and reducing the risk for thrombosis in PNH patients.

Jessica has already undergone cryopreservation, a procedure that will hopefully allow her to have children in the future. The cost of the procedure, $16,000, is not covered by insurance.

“Currently, her transplant team is in the process of testing two donors that are perfect matches to find the best candidate. Until Jessica is admitted to Memorial Sloan Kettering, which is scheduled for March 9, she will continue blood transfusions up to that point,” said her aunt Lisa Larsen, who is spearheading fundraising efforts.

Jessica will undergo treatments of ATG at Sloan Kettering as well as chemotherapy and radiation. She will be an in-patient for up to eight weeks. From there, the patient will be in quarantine for two months with 24-hour care. It will take about eight months before she can return to work.

The fundraiser, on Friday, March 9 at the American Legion, will run from 6 to 10 PM. Tickets are available at the door; there will be music, a cash bar, a 50/50 raffle, a Chinese Auction and a silent auction.

Donations are a key component of the fight. Those interested in helping should visit youcaring.com/jessgreene or email fightforjess@gmail.com.

“The outpouring of support for Jessica has been amazing. We are overwhelmed by our community’s heartfelt prayers, well wishes, and generosity,” Larsen said.